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Sunday, 12 June 2011

Disability Terminology: "Living with Disabilities", "Disabled", Or Something Else?

Disability terminology is tricky.

Disability Terminology: A Matter of Personal Preference

My friend Janet, who has done a lot of work with people with disabilities, does not like the word “disability”.

I’ve come across this before. For a brief time I was talking to a guy on a dating site whose medical history was similar to mine: stroke at a young age and trying to regain as much function as he could. He couldn’t believe that I was okay with saying that I had disabilities.

I had to make an important distinction at that point. I don't consider myself disabled, and you won't ever hear me describe myself as such. I have some disabilities, yes, and I use aids to compensate for the deficits caused by those disabilities. (To me there's no argument that having a left side as compromised as mine, even now, is a disability that produces functional deficits; let's call a spade a spade.)

I do understand that other people don't like that particular disability terminology. To them, I stress that considering myself a person living with disabilities doesn’t stop me from doing what I want to do. I wanted to take ballet, so I took it; I couldn't get anywhere near technically masterful even at the basic exercises, but what what I did resembled ballet enough that I felt good doing it. Same with the yoga classes that I took last summer.  I was never going to be a master in either of those things anyway, so why not just take the classes and enjoy them?

But I digress. My friend on the dating site didn’t like the fact that he “has disabilities” because he wasn’t ready to have a word with negative connotations apply to him. Janet doesn’t like the word because she thinks that the “disability mindset” is too hard to get out of.

“I prefer to call it a ‘bump in  the road’”, she said. “It’s jarring, yes; it’ll shake you up a  bit. Maybe enough to even  cause some damage, so that  you have to ask for help. But it  shouldn’t throw you off track  forever. It shouldn’t stop you from moving forward. But  “disability”? That’s a hard one to shake. You can get stuck there for a lo-o-o-o-n-g time.”

Disability Terminology: Making Compromises

My resistance to moving away from “disability” likely comes from a certain degree of institutionalization. I’ve got a lot of training that says, “We say “disability” because research has shown that this group prefers it”.   On the other hand, I've got a lot of experience that says that people with disabilities don’t like thinking of themselves as having disabilities, or being grouped together with others with disabilities. I understand Janet’s thinking, and actually really like it, but “disability” is a word that comes up so often for so many of us that live with it that I think we do have to find a way to reconcile ourselves with it...if for no other reason that when I understand my disability, I can better express to people what I need.

I worked with several people with mild intellectual disabilities who, in discussions of disability terminology, responded well to this line of thinking about how they might view "disability" more positively:

  • Your disability means that your brain works a bit differently than most peoples’, just like my disability means that my arm and leg work differently than most peoples’.

  • It doesn’t make you any worse or any better than anyone else, and it's only a part of what makes you *you*. There's much more to you than your disability.

  • There’s no shame in asking for help when your disability makes it difficult for you to do something.  The real shame would be if you were missing out on things you enjoyed because you were scared of what people would think because you asked for help.

  • The people that make fun of you for having a disability or asking for help aren't people that you want to know.
This kind of work is ongoing. Sometimes it takes a long time for people to see that they don't need to be ashamed of who they are. Ideally, disability terminology should provides a way for people to express confidence in themselves as people with disabilities, without the stigma attached to current terminologies.

Disability terminology should also be a teaching tool, not something that causes further division. Ultimately we’re all just people with differences, and it's not in any way a bad thing. But society's still not at a point where we're consistently taught that, sadly.

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